Bone metastases---what to expect

I have stage IV prostate cancer, with metastases to pelvic lymph glands, pelvis, sacrum, spine and possibly things starting up in one lung, kidneys and liver which are too small to diagnose as yet.

My initial PSA was 744, went down to 10, then up to 12.6 and the last PSA was 6.2 !2 our of 12 with the biopsy showed an agressive cancer, and Gleason 8.

I don't know how the bone mets progress, what to expect regarding pain, and when radiation is used, and the effects of the radiation.

I was on Firmagon injections, and just switched to Lupron, and also monthly Xgeva injections and daily bicalutamide tablets. Tramadol for pain, and Ativan for the massive anxiety that permeates every waking moment.

I'd like to hear from guys with bone mets---both good and bad experiences. I need to be more prepared for what lies ahead.

Thank you,

CERICWIN

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13 replies. Join the discussion

dear cir, 1st ---donot loss heart. have patiance-cool of mind is *absolute must*. only & only then u might have courage to face
& fight ur stage of Mr C (frighten indeed). but not incurable. ONLY --POINT OF ANXITY-is what is your next line of tretment- & YOU HAD TO CHOOSE IT YOUR SELF- after consulting multiple experts-oncoligist 2-radiation oncologists, they will suggest tretmentline
as per line of experties -you have to learn their suggestions--& *choose one of them* - your recovery will depend only on it
wishing u best till further details

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gnk, thank you for your reply. It's a little difficult to read, but your point seems to be to listen to the doctors.

I do indeed listen to the doctors, but this site is to help share experiences, and that's what I want to do. I want to hear what others are going through, so I can learn what to expect regarding different treatments, the pain involved, and how the metastases spread for most individuals. Doctors don't always tell us everything, and this site is helpful in learning just what others go through.

CERICWIN

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My PSA was 21.6 in December, more than doubled from previous year physical. MRI and CAT showed bone mets spine, pelvis, ribs, femur. Stage IV, 12 of 12 Gleason 9. Started Feb 14 on Lupron Depot (6 mos) and Casodex for 1 week preceding shot and 2 weeks after. Using Flomax daily. Lupron reduces testosterone, which feeds the cancer, so should stop progression.

PSA as of last week 0.3. Oncologist says if pain begins, may be able to do spot radiation. Hopefully that is a long way off. Radiation can have different side effects (or none), depending on where it is given. Take each day as it happens and do not worry about what might happen in the future. I spent way too much time reading what treatments I might want, only to find out most were ruled out, based on my diagnosis. I also overly focused on negative side effects that have never happened. It is important to be informed, but focus more on the positive. Read what the doc gives you for your course of treatment so you can focus on staying as well as possible.

So far biggest problem is hot flashes. Have started treadmill 5 days a week and changing my diet to eat more fruit and veggies and less fat.

You are correct, this site is great to see what others are going through, but more importantly it shows we are not in this alone. Good luck.

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Dear Cericwin,

...Very sorry about what you must be experiencing right now. Please take heart, as it doesn't sound as though you are experiencing pain from the bone mets right now.

While I'm sure not an expert and cannot relate information to you as others on this site might, it seems to me that the decline in your PSA is a good sign. My husband was diagnosed with agressive CA back in 2006 with a Gleason 9. After a Prostatectomy, radiation in 2008, Lupron and Bicalutamide, there were "suspicions" detected on an MRI about 2 yrs. ago (possible bone mets in shoulder). At that time, he did have some pain (like a tooth would ache). His psa would rise and fall thru the years until it reached an all-time high of 169. At that point, the oncologist prescribed Ketoconazole and low dose Prednisone and he continues to receive Lupron inj. every 3 months. Surprisingly, the Ketoconazole is an anti-fungal medication but is known to lower psa... and, it did! The psa went to less than 1 in a matter of a few months. He has not experienced any pain for quite a while now.

My point is, we felt that all hope was gone when my husband was diagnosed in 2006, but realize now that there are so many different treatments that might help.

Above all, we have placed my husband's situation in God's hands while, also, having confidence in his doctors to use their expertise.

This site will offer you a lot of good advice. Stay positive!

Woodhue's wife

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Excellent advice! My husband also suffers from hot flashes and this is really the only side effect he's had so he is very thankful for this.

Best of luck to you!

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Dear Cericwin-

I believe we have had conversation before. My husband had aggressive advanced stage PC with bone mets present from late 2010 up until the time of his passing in March 2013. He was able to function as far as being able to work (office job) but was limited in his mobility (nothing more than a short walk) due to pain in his hips, back, and legs. The last 6 months of his life he experienced chronic pain and was on high doses of morphine e.r. and oxycodone. We also tried ice or heat to help alleviate some of the pain. Radiation and higher dose steroids were also helpful but were limited.
Everyone is different and many individuals respond very well to certain treatments. I do agree with you in the fact that doctors don't always want to give the possibility of negative outcomes. I can recall asking the oncologist (on 12/31) how the disease might progress as I was concerned that my husband could someday become bedridden. I knew the disease was progressing but did not expect that he would be gone in a little over 60 days. I can't bring him back, but I can pray for the brave souls who won't and should not ever give up hope!

Alwayshope55

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ceric,
It sounds like you and I are in similar situations. I too have Stage IV prostate cancer (sacrum, ileac wings, right femur and several spots on my spine). I only found this out via a PET/CT scan in June 2012. I received focal cryotherapy in July 2010 because we thought that the cancer was confined to only the right side of my prostate. Unfortunately, my PSA kept going up until it reached a high of 22.5 in April 2012. He just wanted to do another biopsy and a cystoscopy when it should have been clear to him that the cancer had already spread (micrometastasis) by the time I had my focal cryotherapy. Out of fairness to him, an MRI and bone scan in May 2010 did not show any sign of metastasis. However, the constantly rising PSA should have been a clue. Needless to say, I fired him and went to an oncologist who sent me for the PET/CT. Curiously, the scan did NOT show any cancer in the prostate!

Since then, I have been getting quarterly shots of Lupron and monthly infusions of Zometa. My PSA is currently at 0.6 (up a little from 0.5 in late March) but it seems to be working. I am actually considering intermittent ADT although the oncologist does not like the idea. With Gleason 8 cancer that has metastacised, she does not think I'm a good candidate for intermittent hormone therapy but I want to try it. I have not decided for sure yet but am leaning that way. I am concerned about the cardiovascular effects of long-term Lupron therapy and I would like to regain at least some semblance of a sex life again. At present, I have none. The hot flashes were bothersome at first but seem to have gotten better with time. Hopefully, yours will as well.

Like you, I am curious about what my future will hold. Will I have severe, intractable pain before I die? Will I have broken bones and spinal compression at some point? Will I become a helpless vegetable dependent on my wife to feed me and change my diaper? I don't know. Sadly, I have been told that Stage IV cancer is NOT curable at this time. All they can do is try to keep it from progressing with the Lupron and hopefully that will be effective for a long time. Some people go for many years before first-line therapy fails while others seem to become castrate-resistant much sooner. Each individual has different responses. Fortunately, there are second-line therapies that provide hope if and when Lupron, Firmagon, etc., fails. We now have Zytiga, Xtandi, Provenge, ketoconazole, etc. that can also extend life. More importantly, they can extend QUALITY of life. In the meantime, scientists are working on newer treatments and perhaps, one day, they will actually find a cure.

Right now, I seem to be okay for the most part. I tend to get depressed at times and have difficulty falling asleep. Once I do fall asleep, I can sleep for 8 to ten hours! Other than occasional hot flashes -- which, as I said, have gotten better with time -- and occasional palpitations (flip-flops), I do have some lower back pain but it is not unbearable. Sometimes, my legs are stiff too. At this point, I don't know if it's a side effect of the Zometa infusions which have been known to cause bone pain (seems counterintuitive but it's true) or if it's an indication my cancer is progressing even though my PSA has remained low. My doctor does not seem to know either. Her answer was 'get an open MRI' to see if it's a slipped disk. Yikes! I've had enough scans (bone scan, MRI, PET/CT, heart scan) and every one of them is claustrophobic for me. So I cancelled the MRI and will just try to deal with the back discomfort for now.

You have to be your own advocate in this journey. Doctors -- in my experience anyway -- are not as concerned about YOU as they are about the treatment process itself. And, of course, the money it brings them. If you no longer had insurance or could not afford to pay, many doctors would drop you like a used condom. Also, many of them have neither the time nor the inclination to learn all there is to know about prostate cancer. It is up to you to keep them honest!

Finally, I'm curious as to why your doctor switched you from Firmagon to Lupron. Usually, it's the other way around since Firmagon has been shown to be more effective than Lupron. You might want to ask him or her for his reasoning. I've also read that Xgeva is more effective than Zometa so you are okay there. I intend to ask my oncologist about Firmagon and Xgeva myself.

Keep the faith! As someone else said earlier, God can get you through this.

Jake

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cericwin - Hi Eric . We have chatted by email a couple of times, so I decoded your handle as (see Eric win).

Thanks for starting this thread as I too have the same concerns. I am a little behind you on the chronology and the severity (diagnosed this year at 64 with low PSA 3.68 in January, biopsy was Gleason ( (4+5) with 7/12 cores positive and right PNI, and bone scan showed Oligometastasis (5 distant tumors). So far the Lupron has gotten my PSA down to 0.9 in 4 weeks since March 28th 4-month shot and my Testosterone is down to 24. Will go on Xgeva in August when I become Medicare eligible or possibly before since I have put a giant dent in my maximum out of pocket and exceeded my deductible on the PPO plan I am on til then.

I was admitted into the Univ of Florida & Shands Metastatic Disease program and assigned to a medical oncologist. Having been educated on this forum as well as the HealingWell forum and Dr Charles "Snuffy" Myers' videos, the folks at Shands were surprised my eyes were not glazing over as they discussed various treatments and medications.

The medical oncologist compared me to a second year med students who convinces himself he has every malady he reads about.

He validated the course of treatment I am on, (said he would have done Casodex 2 weeks before and 2 after but luckily my flare was minor) will add a DEXA bone scan even though QCT is deemed more accurate (save that for when we eventually get closer to proton therapy, SBRT or whatever).

When I commented to the director of admissions how impressive the videos on their VERO machine were (2nd in US with MD Anderson being the first) he said hopefully that's as close as I will ever have to get to the VERO machine.

My medical oncologist warned that we do not want to use all the arrows in our quiver at once, so we can attack the advanced PCa one remedy at a time or in various combinations without giving the cancer a clue as to our entire arsenal that It could then have more time to resist (keep the cancer guessing as to what else we will throw its way).

It's only natural to want to feel we are doing everything we can to combat this disease. There is not a whole lot to be done between 4-month Lupron shots other than diet, exercise and of course prayer. So to feel I am doing something I am loading up on Pomegranate, Curcumin, Reversatrol (might just go straight to the source and use red wine nightly), Vitamin D-3 etc.

I am not quite ready to go on the full blown Mediterranean Diet Dr Myers recommends but have added coconut oil, olive oil, lycopene, tuna, etc. by for example adding tomato paste generously instead of butter.

Dr Mercola's website http://www.mercola.com/ is more protein and meat friendly and he recommends Krill oil that I had never heard of, but says no soy or Gluten/Gliadin, had never heard of the latter either. Some good suggestions like using lettuce on sandwiches instead of bread.

I have no symptoms other than the test results but was having some trouble sleeping. So invested in a 4 " foam mattress cover to lessen the effect of the hard mattress I used to prefer. Also adopted some of Dr. Mercola's better sleeping recommendations.

So keep up the good fight, Eric, and let's all keep posting to let each other know what to expect in way of pain and symptoms on the bony mets trail.

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Eric, one other thing. SInce PSA has not been a very good indicator for me, we are going to do bone scans quarterly to augment the PSA, free PSA and Testosterone readings.

As with the bone density test, going with the regular bone scan rather than the F18 until we get closer to proton therapy, SBRT, chemo or whatever may be required after we run the gamut of Lupron, Xgeva, and some day also probably these or their successors as technology evolves Avodart, estradiol patches, Leukin, Ketoconazale, Provenge, etc.

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Thank you so much, MsJulie. I can't make out the other drug used with Zytiga, the way that Dr. Meyers pronounces it isn't clear how it's spelled----can you tell me what it is?

I definitely will want to ask my doctors about it, both my urologists and my oncologist, when I have more information about them.
In several cases, I've heard of bone metastases being resolved or in remission, but it seems to be rare.

In any case, this disease is so different from individual to individual, and each person's response to the drug therapies varies wildly.

CERICWIN

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MsJulie, I can't thank you enough for your post. This has given me new hope----I'd resigned myself to my fate, thinking that there was no hope for the bone metastases, and I was wrong..........even if it doesn't work out, I must try to have hope, regardless.

I looked at a number of different spellings, and finally determined that the drug Dr. Meyers used in that case is dasatinib, adminisered with Zytiga. I'll be asking the doctors about it during my next appointments.

Even if these aren't available, or if they don't work for me, there may be other treatments----I need to hold on to hope, and not give up so easily. This week, fantastic news from my urologists----PSA is down to 4.6---the lowest since this began, and my testosterone is down to 17--also the lowest. I'm headed in the right direction.

CERICWIN

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Eric - Dr. Myers is referring to Spyrecel, not to be confused with the clinical name for Provenge (Sipuleucel-T) which is similar

http://www.hsc.nihr.ac.uk/topics/dasatinib-sprycel-for-prostate-cancer-andn dash-in/

I too was intrigued by the possibilities of this experiment Dr Myers was successful on with a fellow bony met person.

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